New to the group

I will give you one piece of advice, though, if you don't mind. Make yourself an expert on this disease because your doctor most likely doesn't know much. The American Porphyria Foundation has a WONDERFUL website out there. You should go check it out and read everything you can. They even have a drug database that can tell you what drugs you should not take. Good luck! Let us know what you find out!

Long time since we heard from you. So, you were finally diagnosed. Lots of tests huh, but it's good to know that you finally got some clarity.

I agree with becoming an expert, as I've as yet talked to anyone face-to-face who has any expertise in Porphyria of any variety. There are several drug databases in the world and I tend to use NAPOS, just google. It rates most all of the drugs, check it out, it's a very good database. I've also compiled lists of foods, chemicals and other potential triggers. We are all individuals, so what I might react to, might be safe for you, so learning from yourself is also very important. I've kept a simple diary since the end of last year.

I'm just now feeling better, having been down for a year, but again, that is my experience.

It's really good to see others using this site, I was beginning to think that I was the only porph around LOL.

Good luck ladies and have a wonderful week.

A porph in California

Deborah

Been a long time since we talked. Over the summer, I have received my AIP diagnosis. This is good, I guess, only because it is intermittent and may actually go away. The summer has been tough, but I am with a pain management doctor now who is treating my neuropathic pain and my abdominal cramping. At least I am now in a position where I can function like a semi-normal human being. How are things going with you?

Rachel

For some reason, I didn't get any emails telling me people had been posting, so I just assumed that no one was posting on this site. Then I got an email today, came to the site, and realized we have a bunch more members than we had before. I am happy to see some more supportive "voices" out there.

~R~

I guess I wasn't getting e-mails as well until yesterday, hum. I'm interested in how your neuropathy is expressing itself. I have intestinal cramping, especially during the month when the smoke was so thick from the forrest fires. I also get joint swelling and pain along with neuropathy in my back and legs.

They added Varegiate Porphyria to the PCT in March, which explains the acute episodes that I've had since the birth of my son 33 years ago. I thought that the episodes were food poisoning, but who could be so unlucky to have poisoned so many times. I've had multiple attacks this year, but at least I know what to do now - sugar and carbs help. My oncologist has given me two IV's with 5% Dextrose, good stuff, it backed out all of the pain.

Good to hear from you. You can e-mail me directly at the above address and yahoo.com., that way I'll know that I'll get it.

Have a great evening.

Deb

I am not a porph, buy my husband has recently been diagnosed with VP. It is hereditary in his family but unfortunately our Hem/Onc had never seen a case and although he was able to diagnose it through total porphyrin, fecal, urine and serum tests, he doesn't really know what we can do to manage it. Does anyone have any idea where I can get more info in the four corners area? The other thing is that it is extremely difficult to find information in Spanish and although the symptoms have been in his family for generations, no one before him has ever been diagnosed. They live in a remote part of southern Mexico and there is no information.

Any ideas?

I've been diagnosed with PCT since August of last year and VP since March. I'm currently healthier than I've been all year, the reason, I started focussing on wellness. I have gained more information on porphyria than my doctor, journal to identify my triggers and haven't had any phlebotmies since March. I'm learning what triggers the acute symptoms of the VP and my ferritin levels are normal. I've had only minor blistering in the past couple of months.

In the past year I haven't seen one doctor that has ever seen porphyria of any type, so learned early on that it was on me to learn as much as I could. I think that it was last year that I joined this site, but had no one to share with. You don't say anything about yourself. Do you have PCT?

Deborah

I don't know where the four corners area is, could you clarify? Have you checked with the American Porphyria Foundation for information? They have a large web site, but I don't know if they offer Spanish.

Good Luck

Deborah

One thing that seems to have helped a little with milder abdominal pain attacks, are glucose tablets.

Just an idea.